My name is Jonathan and I have severe Hemophilia A. I am 31 years old, married to the love of my life, have four kids, and I am a Financial Advisor. I have a real passion for the hemophilia community and am constantly looking for ways to give back. My wife and I started a Non-Profit Foundation called “Hope for Hemophilia,”and are constantly working on ways to reach out to others in this growing community. This past year we started a web site designed to help connect the community even more by utilizing social networking technology. The site is www.hopeforhemophilia.net. We ...
Have you ever had a dream that you just knew you had to fulfill? Something you just knew your life would not be complete without? So it was for "Brownie", a thirty-something airline pilot living (and flying) with hemophilia. Brownie started flying at the ripe old age of ten. His first flight lesson recorded in his logbook is dated 1986! He even remembers how he had to sit on phone books to see out the window, and his flight instructor had to strap blocks onto his feet so he could reach the pedals for his lesson. He says, “Almost since I ...
[caption id="attachment_572" align="alignleft" width="235" caption="Hemophilia doesn't keep this "Ace" down"][/caption] Fourteen year old Michael Schnitker is a boy on a mission, a boy with plenty of determination. He is a boy who loves baseball, and doesn’t let his hemophilia keep him from playing the sport that he loves. He does remember a time when he really wanted to play football, but soon learned that baseball was a much better sport for him. He says, “I really got interested when I saw the Little League World Series on TV.” He started playing T-ball at the ripe old age of 5 and has ...
The following article was written by our first guest blogger - David Simmons. It chronicles his decision on getting a knee replacement despite having severe Hemophilia. I had always known, following an inability to get rid of a stubborn limp after college and upon receiving several opinions from orthopedic surgeons, that I would someday require total knee replacement surgery. My left knee had become a “bone on bone” situation after many episodes of repeated bleeding into that joint as a child. Over time, the amount of cartilage remaining in the joint slowly diminished. I remember one physician who took a glancing ...
We have started to talk a lot on sweetaffliction.com about how important it is to incorporate fitness into your daily life when living with hemophilia. Well just as important as it is to keep your body strong as a hemophiliac, it is just as important to keep your mind strong and healthy. Below is an article by Kimberly Moore on this subject. Kimberly Moore is the owner of Custom Fitness, a fitness consulting and personal training business. She has spoken to numerous companies and organizations and is the author of The Healthy Lifestyles Program. You can contact her to speak to your ...
[caption id="attachment_496" align="aligncenter" width="240" caption="Hemophilia shots don't "suck" for brave Jakob Watt"][/caption] At my speaking engagements, I always mention that if you can deal with hemophilia, then you can deal with anything life throws at you. Kids need to be proud of their hemophilia and learn to tell their friends about it in a positive way. I also believe that by being brave enough to infuse themselves with a needle - something most kids without hemophilia could never imagine doing, kids with hemophilia will be stronger and their friends will look up to them. This article is written by a ...
Have you ever had a dream that you just knew you had to fulfill? Something you just knew your life would not be complete without? So it was for “Brownie”, a thirty-something airline pilot living (and flying) with hemophilia.
Brownie started flying at the ripe old age of ten. His first flight lesson recorded in his [...]
Fourteen year old Michael Schnitker is a boy on a mission, a boy with plenty of determination. He is a boy who loves baseball, and doesn’t let his hemophilia keep him from playing the sport that he loves. He does remember a time when he really wanted to play football, but soon learned that baseball [...]
On November 11, 2005 my 11 month old son was diagnosed with severe Hemophilia A. We began infusing him with factor VIII for bleeds. Within 4 months, we began to notice the factor was not healing him as quickly. It was around then that we found out about his inhibitor. After lengthy discussion with his [...]
Article Update – since this article was originally written Patti Matthews has developed a separate blog site for Kelsey which you can visit at www.theupfamily.blogspot.com . Here you can get daily updates on Kelsey’s progress.
I wanted to write an article about the unexpected coming of our new little baby and how surprises come in [...]
At my speaking engagements, I always mention that if you can deal with hemophilia, then you can deal with anything life throws at you. Kids need to be proud of their hemophilia and learn to tell their friends about it in a positive way. I also believe that by being brave enough to infuse [...]
Yeah so my doctor calls me and tells me I need to get the regular flu shot, a pneumonia shot, and the swine flu shot as soon as I am able to get in. So dutifully I made my appointment yesterday and went in this morning for the first two shots. As a precaution I [...]
With the start of school just around the corner, it is time for us parents of kids with hemophilia to begin planning our annual meeting with our child’s new teacher. Back to school can be an intimidating time if you have a child with hemophilia. It can be scary to be leaving your child, in [...]
